University of Wisconsin-Milwaukee, USA.
Georgia State University, USA.
Autism. 2021 May;25(4):1154-1160. doi: 10.1177/1362361320972890. Epub 2020 Nov 25.
When a parent learns of their child's autism diagnosis, they may be overwhelmed, confused, and frustrated. Family navigation services are designed to improve access to care. While these services are a promising intervention to enhance well-being and developmental outcomes, there are limited tools that can systematically facilitate the development of a shared navigation plan that prioritizes the concerns of the family. The Family-Centered Autism Navigation semi-structured interview guide is designed for family navigators to triage and prioritize caregiver's needs to coordinate and navigate systems of care after learning of their child's autism spectrum disorder diagnosis. The goals of the Family-Centered Autism Navigation interview are to (1) identify family and child strengths; (2) identify family/caregiver concerns regarding navigation of services and systems following their child's diagnosis of autism; (3) measure change in caregiver knowledge, ability and skill as it relates to understanding, remembering, and evaluating information they receive; and (4) assist with the development of a shared navigation plan. When using the Family-Centered Autism Navigation guide, family navigators and caregivers co-create a family-centered, prioritized action plan that supports and prepares caregivers as they navigate systems of care. This short report describes the development process of the Family-Centered Autism Navigation semi-structured interview guide. We utilized brief interviews ( = 42), expert feedback ( = 13), and quality improvement strategies ( = 2 family navigators) to develop the questions and determine the usability of the Family-Centered Autism Navigation interview in practice.
当父母得知孩子患有自闭症时，他们可能会感到不知所措、困惑和沮丧。家庭导航服务旨在改善医疗服务的可及性。虽然这些服务是一种很有前途的干预措施，可以提高幸福感和发展结果，但目前还没有可以系统地促进制定共同导航计划的工具，该计划优先考虑家庭的关注点。《以家庭为中心的自闭症导航半结构化访谈指南》旨在帮助家庭导航员对护理人员的需求进行分类和优先排序，以便在了解孩子患有自闭症谱系障碍后协调和导航医疗服务系统。《以家庭为中心的自闭症导航访谈》的目标是：（1）识别家庭和孩子的优势；（2）识别家庭/护理人员在孩子被诊断出自闭症后，在服务和系统导航方面的关注问题；（3）衡量护理人员在理解、记忆和评估他们所收到的信息方面的知识、能力和技能的变化；（4）协助制定共同的导航计划。在使用《以家庭为中心的自闭症导航指南》时，家庭导航员和护理人员共同制定一个以家庭为中心、优先考虑的行动计划，为护理人员在医疗服务系统中提供支持和准备。本简短报告描述了《以家庭为中心的自闭症导航半结构化访谈指南》的开发过程。我们利用简短的访谈（ = 42）、专家反馈（ = 13）和质量改进策略（ = 2 名家庭导航员）来开发问题，并确定《以家庭为中心的自闭症导航访谈》在实践中的可用性。
